Patient's rights, doctor's duties

Interview with the lawyer Elisabetta Renier

by Francesca Conti

AICARM Aps lawyer Elisabetta Renier clarifies the patient's rights and highlights the fundamental legal aspects of the relationship between patient and doctor. Clear, complete and understandable information is necessary so that the patient can make informed choices. Communication becomes essential when deciding on interventions that have a strong psychological impact, such as living with an implanted defibrillator. The patient has the right to refuse the implant or, once inserted, even to ask for its removal. It is up to the doctor to ensure that the patient has understood the consequences of this decision.

Let's start with the basics: when we talk about illness, where does the patient's right begin?

I would say that everything starts with information. The patient has the right, or rather, I would say the need, to know exactly what he is facing. Whether it is a generic diagnosis or a specific problem such as cardiomyopathy, the information must be clear, complete, understandable. Only in this way can he express informed consent, which is not a simple signature on a piece of paper, but a conscious choice.

Informed consent is much more than a form to sign.

It is a process, a dialogue, a shared decision between doctor and patient. It must be free, specific, revocable at any time. And it must be based on adequate, comprehensible, updated information. Without correct information, consent is flawed, therefore legally null.

What role does the doctor have in all of this?

A central role. He is the one who has to build this communication bridge. He must make an effort to translate the technical language into words that the patient can understand, explain the diagnosis, the prognosis, the risks, the benefits and the therapeutic alternatives. Even when there are no alternatives, it is information that the patient has the right to receive. The idea is to really involve him in the decisions, not just in appearance.

Are there situations where this communication can be more difficult?

Many. Sometimes you are dealing with very elderly patients, or with cognitive difficulties. In other cases, the barrier is simply cultural or linguistic. But the doctor must always try to bridge that gap. He must also be able to evaluate whether the person in front of him is truly capable of understanding and deciding. It is not enough for a person to say "I understand", if he is then unable to explain what he has understood. The doctor has the duty to verify, with care and sensitivity. And in cases where the patient is not capable of understanding and willing - think of minors or people with serious disabilities - a legal guardian will provide consent, always in the best interest of the person being assisted.

What if the patient doesn't want to know?

That is also a right. But it must be an express, conscious refusal. No one can be forced to receive information, just as no one can be excluded from it without authorization. If you want to delegate someone to receive the information - a family member, for example - you need specific authorization. Privacy is not a detail.

What are the doctor's duties in this relationship?

First of all, respect the dignity and freedom of the patient, without discrimination. Then, guarantee the psychophysical health of the person, which also includes pain management, if possible. It must act with competence, constantly update itself, and not have profit as its goal. Medicine is not a commercial enterprise. The compensation is legitimate, of course, but the goal must always be the cure. And obviously, it is bound by professional secrecy.

What are the patient's rights, other than consent?

You have the right to personalized treatment, to access information about yourself, to choose your doctor or facility, to the extent possible. You have the right to safety, privacy, and – if something goes wrong – also to be compensated. You have the right to be listened to, not to suffer needlessly, not to be subjected to therapeutic obstinacy. And, most importantly, to actively participate in decisions that concern you.

Let's go back to the specific case of cardiomyopathy and the defibrillator: what changes compared to the general picture?

Nothing in terms of principles, but a lot in terms of complexity. When talking about implantable devices, such as a defibrillator, the patient must be faced with all the implications: benefits, risks, alternatives, possible costs not covered by the Health Service. It is essential that the patient is fully aware of the choice he is about to make. Because here it is not just a matter of a cure, but of a significant transformation of one's daily life.

What information should a patient receive before accepting the implantation of a defibrillator?

First, the clinical rationale for the procedure: why is it necessary, what risk do you want to prevent, what are the prospects for survival and quality of life. Then, the surgical procedure itself, which involves anesthesia, recovery times, possible immediate or long-term complications.

You should know that the device will require periodic checks, for example to monitor the battery or verify that it is working properly. You should also be informed about any limitations in your daily life, such as interference with magnetic equipment.

Defibrillator removal

Are there also psychological aspects to take into consideration?

Absolutely. The psychological impact of living with an implanted defibrillator should not be underestimated. Some patients develop anxiety, fear, or a sense of fragility. It is important to offer psychological support to accompany them in this life change and make them participate in the treatment process, even from an emotional point of view.

Can the patient refuse the defibrillator or ask for it to be removed later?

Yes, consent is always revocable. The patient has the right to refuse the implant or, once inserted, even to ask for its removal. Of course, the doctor has the duty to ensure that the patient has understood the consequences of this decision.

You cannot accept or refuse a medical procedure without first knowing all the risks, alternatives and implications. This applies to implantation as well as removal. Here too, awareness is key.

Are there emergency situations where consent is not required?

Yes. In situations of urgency and immediate danger to life, such as sudden cardiac arrest, the doctor has the duty to intervene to save the patient's life even without consent, if this cannot be expressed promptly.

For example, if a defibrillator implant is necessary following a cardiac arrest and the patient is unconscious or there are no family members available quickly, the doctor can act in a state of emergency. But once the emergency has passed, it will then be up to the patient - when he or she is able to understand again - to decide whether
whether or not to continue with that treatment.

So can we say that, at the heart of everything, there is the relationship of trust between doctor and patient?

Exactly. Everything revolves around this relationship, which must be based on mutual respect, transparency and shared responsibility. The doctor is not just a technician, he is an interlocutor, a guide. The patient is not a passive subject, he is an active part of the process. Only in this way can we guarantee truly effective, respectful and human assistance. In the end, there is only one common goal: the health of the patient. And this is built, first of all, by communicating.